morgan617

It looks like something to do with EDS, but I'm not sure, and I know nothing about EDS. Hopefully someone else knows....morgan

Oh Nina, I am most certainly a nut job, but only of the best kind She actually said, considering my life and my body, I am a very strong person. shucks Of interest to all those with the diagnosis of conversion disorder: and who doesn't have at least one of those, although I am certainly in the Guiness Book....she stated EMPHATICALLY, that a person with a real conversion disorder is too mentally sick to hold down any kind of job and since I worked over 30 years, it's virtually impossible that I would have the personality of someone with that disorder. I asked her if she would let 95% of the doctors here know that, little known by them, fact. Do I have mental health issues. Of course, but they are not the cause of my physical problems, quite the other way around.....2 good visits in 2 days, someone catch me while I faint....

Thanks, it actually went really well. But I am glad it's over, it took two hours, so I am wasted....tiredmorgan

Well today I go for my SSDI re eval mental health test with the guy trained to be a principle. I know he is qualified in other areas, but it just sounds so weird to me, that a guy with a PHd in education can diagnose your mental health status. Hopefully he won't have his big finger slapping ruler with him!!! So anyone with any spare prayers or thoughts, it will be appreciated! morgan By the way, just so you know what a dork I am, the last couple of esophageal dilations I had were not great, and I asked hubs to explain to my gastro why I didn't want to go back any more. (you know, invalidation, won't even write "stricture" when he can't even get the dilator down, annoyance that I need potassium IV's, etc) So he tells Hubs (I am awake but inarticulate in any way) that my throat was very tight and my stomach looked pretty bad. Then Dave says...she's doesn't want to come any more. That's it. My doctor stands there for a full minute, waiting to hear why, and Dave says NADA. SO finally the doctor says, well okay, have her call when she needs it again. Making me look like the cretin here, yet again. So, with my foggy brain, I write and explain if he would just have the kahunas to write stricture, (after two years of every eight weeks, my dianosis is still "Diagnostic gastro!") and yada yada. I managed like 3 pages of stuff to write. So yesterday I get my records from the last gastro, which was a week ago Monday, he hasn't even seen my letter yet, because it wouldn't have gotten to him, and guess what? He has written I have 2 strictures and Periodic Paralysis. It is in writing now. Oh my reactionary brain....I sent him cookies.....

Gayla, I think at this point, he thinks it would just be one more thing he can't fix, or it will be normal and I will be snubbed again. Who knows. I do know for sure there is something wrong with my sleeping. Thanks Corina! morgan

Well, I saw my Ear nose and Throat guy today, the sweetest man on earth. I haven't seen him in 2 years, because the last time I did, he had to carry me out. It was so mortifying. I swannee, he is the only doctor that has never ever made me feel small or crazy. Anyway, he said he thought I needed a sleep study, I'm not sure why, but I have been trying to get one for at least a couple of years with my primary, who refuses, saying there would be nothing we could do about it if it was abnormal. (I'm thinking CPAP, as I wake up not breathing) I told him about Dan and he said he would order it and let Dan know. So, I guess I will be getting one after all. If it makes Dan mad, so be it, it's not like I have even seen him recently. But, since I haven't had a decent visit with a doctor since I don't when, I just thought I'd post something positive for once....morgan

They have manual ones that you can wrap around your arm by yourself. Very inexpensive, as Nina said. The automatic ones never work with me, because of tachycardia. It will error if my pulse is above 102 or so. Very frustrating indeed. morgan Also, I have very tiny arms (not to be mistaken with my butt, which is the size of the titanic) and if a cuff doesn't fit properly, the readings will not be accurate.

Oh Amy, thoughts and prayers are coming your way! morgan

I do have that, but it's hard to describe, major brain fog is not helping. It feels like I have pulled all the muscles in my lower abdomen. If I sneeze or something, it feels like I'm tearing muscles and causes very sharp pains. Not in my gut, but further out. It's very uncomfortable. However, it seldom bothers me during the day. It is odd. As far as the gut, forget it, I have given up trying to figure that one out...morgan

I have two dvds, so am happy to give someone one. I haven't had the migraine problem and am a bit sorry they focused so much on that aspect. It will make any doctors I have that watch it, question me even more, because it was stressed so much. Trust me, I know my doctors. I am also far more cold intolerant than hot. I kinda wish they would have just stressed we have temperature control problems, and hers was heat. It really sounds like I'm nit picking, but I don't mean to. I'm just glad they finally did something!!!!! I know the majority of people here do have problematic migraines, but I don't think I am the only one that doesn't. I just get a massive headache that goes away a bit after my bp goes back down. Other than that, I thought it was really good. Anyway, first come, first get, just let me know....morgan

Katti, I worked at Gritman for almost 4 years and went to the U of I. I had one of my babies there. It's small world. I haven't heard about any docs in Seattle. I thought of going to Portland OHSU, but am just too tired at this point. I'm kind of past pursuing every avenue, and really tired of being labeled as crazy. There is a site you can go to and see if doctors have ever been in trouble or anything in this state. If you want it, just pm me and I'll send it to you. morgan

Welcome Katti! I was born and raised there. Waaaay before you I am sure. I live in Washington and all I have to say is, my experience up here is no better than what you are getting there. I'm really sorry, but I don't believe there are any doctors west of Cleveland or Mayo or whatever that have any experience in this. You may find a doctor who will work with you, but having been a nurse in the pacific northwest for 30 years, I can tell you, we are way back in time on this. Your best bet is to find a cardiologist or neurologist and ask them up front if they are familiar with POTS. I just don't want you going through what I have. This is not the place. The U of W does nothing with POTS. My primary checked. If you have the money to spend, there are doctors, they are just further away, but you gotta kiss a few frogs first.....morgan p.s. how's the snow down there????

Sorry, Nina, hope it gets better soon. Did you ever get any info on the heart rate thing???? morgan

I got diagnosed with it many years ago, but think it is beginning to take it's toll. I have constant ulcers on my eyes, have had my tear ducts cauterized (it didn't help, so don't highly recommend it) my tongue is atrophied and my joints kill me. I've lost pretty much of my sense of taste and my vagina is the sahara desert, not that it matters much... even my skin is horrible. It is not fun. I don't know if it's related, but it is autoimmune, so who knows. We can't just have one thing you know.....morgan

Thanks for your support and replies. My husband also goes to this guy and actually has an appointment with him next week. Jake is not in a great place to try and talk to him. He is very passive to begin with and truly feels like a deer in the headlights on this one. I did send him a letter and told him Jake deserved better from him. Dave will see him this one last time and just tell him Jake would like to know what he did wrong...of course he didn't do anything wrong..but I want this idiot to see what his pettiness has done. Dave is very non confrontational (opposite of me ) so hopefully the jerk will talk to him. Then Dave will switch also. I just want him to think about what HIS insecurities have done to an innocent. If this guy wants to be mad at the social worker or me, okay...but he has taken it out on the one he knows is not able to stand up to him. That's pathetic. As far as my SSI thing, since I am now a DNR, and in a wheel chair and it is charted I am basically terminal, I'm not too worried about it, but it's just the hassle. Why don't they spend their time, efforts, and money on the people who really are cheating them????? Just to put the whip cream on the top, a van 360'd last night and took out both our cars.....This is the worst winter we've had in 15 years. He couldn't leave the scene because his van was stuck in our car. Jake's car got hit the day before too. Oh what world.....(the wicked witch of somewhere) morgan

Sweetie, don't know what to tell you. I get the abdominal pain, but my trouble is more with urgency and the worst pain is right in my urethra. I usually get a small towel or something and get it as hot as I can stand and "soak" that area. It helps relieve the urgency a bit, but I haven't found anything that helps with the bladder pain. A million years ago, I had DMSO instillations. About 4 or 5 of them I guess. I didn't notice that they helped a lot, but they sure make you stinky, although you can't smell it yourself, everyone around you sure can. It was FDA approved for it back then, but I don't know if it still is. No one has ever given me a diet or anything like that for it, so I have just learned to live with it. Sorry I can't be more help. morgan

Congrats! morgan

I don't tolerate caffeine at all, in any form. And I haven't for a long time. I initially went off it because of my meneires (inner ear disorder) but it really makes me surge and my heart pound too. A big nono for me. But I sure do miss it! morgan

I have been on disability since 2003. I have not gotten better, I have gotten much worse. However SSDI does not see it the same way, so I have to go through the entire process again. All the forms, seeing doctors, everything. Then to top it off, on the same day I find this out, (today) we get a certified letter from my son's primary discharging him from his practice. he has thirty days to find another doctor. Jake has filed for SSDI (He has had arthritis since age 11, he's 26, it is progressive, his lower back and hips are almost fused, he has inflammatory bowel disease, hyperparathyroidism, Barrett's esophagus, gastroparesis, severe migraines, generalized anxiety, panic attacks, scoliosis, kyphosis, he takes over 30 pills a day and is on enbrel) He uses no pain meds ever, never calls them, goes in for all his appts. has never done anything to deserve this. he is just sick. Any one in the health care field knows that being discharged from a practice is a death knell, as far as getting another good doctor. The kicker is, he is just being a big weenie and got his feelings hurt. By a social worker helping Jake. But instead of calling him and just explaining it was becoming complicated or he is a big wuss, he sends a form letter. I could not be more disgusted. Jake has done absolutley NOTHING wrong and is being the one victimized. I am so sick of all of this. I am truly beginning to believe there isn't a single decent doctor in this universe. I am used to this for myself, but for God's sake, a kid who's been sick so long, he has no memory of ever being well. Who doesn't smoke, drink, do drugs and treats people with the utmost respect. He's in the middle of trying to get SSI, I am too, again, and he gets fired by someone we trusted. Does it ever end???????????? disgustedtodeathmorgan

I think people come into our lives for a reason, sometimes I am just hard pressed to figure out why, as if I don't have enough on my plate. Toxic is toxic, whether it's a drug or a person. I don't know about anyone else, but I have lost all my friends due to my illness, and I think it leaves me open to toxic people, for that very reason. I have become very careful about who I allow in my life and who I don't. I didn't use to be this way, but my health has forced this on me. What I have realized is, that this is not really a bad thing. I'd rather be lonely than used and hurt and then have to "detoxify." Good for you teasrose, for having the strength to let go of a bad thing. Good people are out there, just waiting for us. It can just be a bit of a thorny path at times.....morgan Corina, you are sooo right...I miss the old me somedays, but have come to terms with who I am now, and know I am trying to be the best person I can be, under the circumstances....

That's just about uncountable. You need to get it checked out. There's a difference between tachycardia and rates of 220, especially if prolonged. If you haven't done this before, please call your doctor.....morgan

We shut down to the most basic channels and so didn't have it. I forgot to ask someone to tape it. Thanks for the input on reairs Pooh, I will talk to my neighbor today.! morgan

Well yippee ki yaa, will hope the port insertion goes as smoothly as can be hoped and you get your little fishy butt out of there soon! AS far as the PET scan goes, it can't hurt anything and you never know....good luck sweet stuff...mamamorgan

I have horrible calcium deposits in my joints, of all things. No problems anywhere else that I know of. I had surgery on my shoulder, but it had hardened from toothpaste consistency to nails, and is intertwined around the tendons, so that was pretty pointless. He got out what he could and did a bunch of other stuff. As far as stones, I've never had any problems and I've bad shoulders for over 20 years. My sister gets little calcium deposits in the skin under her fingers and they form a blister and pop out. It's the weirdest thing I've ever seen, but maybe your ears will pop them out too and they won't be painful any more. If they are painful. morgan

Jake takes off his CPAP machine virtually every single night, shuts it off and sets it neatly on his night stand. He has never once remembered taking it off, let alone turning it off and neatly putting it away.....morgan